A little girl in my community passed away today. Not the T1D community, in my city. I never met her or her family, but they are very well known in our area. Everyone followed their story, including me, and I can’t help but see parallels between their family and ours.
Usually, this is the way I feel about the phrase “at least it’s not cancer”. I don’t like when people use it to comfort someone dealing with T1D. If you use it to empower yourself, that’s different. But most of the time, I don’t like it.
Usually.
Today, Mother’s Day, I went onto Facebook and saw several “Rest in Peace” posts. For a second, I thought I was seeing things. There must be some mistake.
I frantically wracked my brain trying to think of the mom’s name
What was the page she had been using for updates?? I couldn’t remember.
It had been months… no years, since I had seen an update.
The last I saw was 4 years ago, when the little girl had become sick again after being cancer-free for over a year.
She had needed a donor for something. Tens of thousands of people were tested to see if they were a match. But they didn’t find anyone. The doctors had said she wasn’t going to make it.
Yet, she did
She miraculously got better. She went to kindergarten. Her hair started growing back (one of her wishes was for her hair to grow enough to put it in a ponytail).
She was doing ok.
I had looked her up a few times since then. There were just regular updates that any family would be sharing.
She was ok. They were ok.
And then I found it
I found mom’s page. I found the heartbreakingly detailed post about what had happened to her baby girl.
About the bacterial infection that took over because the chemo had destroyed her immune system.
Everyone who tried to save her, but ultimately couldn’t. The choice the parents had to make to let their baby go. The reaction of her little sister, who didn’t understand why she had to become the “big sister” now.
About the 7 years of being in and out of the hospital.
That’s when it hit me
Seven years.
I forgot it for the second year in a row, but my son’s diaversary was last week. His seven-year diaversary.
Seven years ago, my son was diagnosed with T1D and her daughter was diagnosed with cancer.
They spent weeks and months living in the children’s hospital on several different occasions during those years.
We went to quarterly appointments in the hospital for my son to get weighed and measured, chat a bit, and get a new A1C reading.
She was poked and prodded more than any child should endure. Pumped full of toxic chemicals in the hopes of saving her life.
He is poked multiple times a day, but not like that. And he gets a life-saving hormone to replace the one his body no longer makes.
He gets to play with his friends and siblings, go to school, go to birthday parties. He can do anything any other child can do.
She just wanted to grow a ponytail.
Children with type 1 diabetes die
I am in no way saying T1D is easy. Many families almost lose their child at diagnosis from DKA.
Some do lose them from DKA or misdiagnosis.
Things can go wrong on this type 1 journey and lives are taken. I usually hear of a couple a week at least.
I don’t want to minimize T1D or anyone’s feelings about it.
I’m not usually one to say, or even think, “at least it’s not cancer”.
But for me, on this Mother’s Day, with tears in my eyes as I read about this family…
This family who got their diagnosis when my son got his.
Knowing that our kids were the same age. Knowing that this could be anyone.
Today, I can’t help but think.
At least it’s not cancer.
RIP Hannah ❤️
“At least it’s not cancer.” It’s a tricky phrase. Do you find it ok or do you dislike when people use it? Leave your thoughts in the comments and join the discussion on the Carb Counting Mama Facebook page.
I really appreciate you sharing your thoughts on this Leah. I’ve thought about it a lot too and find it difficult to sort out how I feel about ‘at least it’s not cancer’. I do know I can be very irritated when people say it to me. I get confused because I know they think it’s helpful but it’s not helpful at all. I also get confused because some of these people are my friends and what kind of friend says these things? The worse thing is that this comment makes it feel like I should be grateful for the T1D diagnosis and , at the same time, I should feel really sorry for cancer patients. This is kind of screwed up logic that messes with my mental health.
I found it interesting that when I actually had cancer, a common ‘comfort’ phrase people said to me was “at least you have the type of cancer where you can have an operation. At least it’s not leukaemia’’ .
I realized then that we truly believe in comparing levels of despair and that we believe it’s comforting to point out that one’s situation could be worse., whatever that might be to each of us at the moment.
Part of my confusion is that I do think it might be possible to find a moments ‘comfort’ when you think about someone worse off because these thoughts can rally your energy to keep going. For example, in the winter, I find I’m thankful that I have a home and my thoughts go out to people without homes. When I have these thoughts, I often look for a place to make a donation and the act of donating makes me feel better. Another example is thinking about a family who’s loved one died in a car crash when I meet a family whose loved one is alive but severely injured. In my head, I think of worse scenarios but I keep these thoughts to myself. I know it’s not helpful or comforting to share my opinion on ‘levels of despair’ or comparing suffering.
The bottom line is that all health issues create suffering. When someone says ‘at least it’s not cancer’, it feels like they are dismissing the suffering of the families touched by T1D. Perhaps there is a moment to be grateful for the type of suffering of T1D but nothing anyone can say takes away the diagnosis and the impact of the diagnosis on lives and families.
What is always helpful is that we have supports for our mental health to keep our energy levels up to keep going in our lives with T1D. From the distant world of social media, I support all carb counting mamas. I wish there was something more to say to help. Hugs to all.
This is such a thoughtful and thought-provoking comment! I personally think it boils down to the difference between comforting yourself with these thoughts and phrases, versus, someone else trying to comfort you with them. You’ve given several examples of both in your comment. I think if you’re in a place where you can think “at least I’m not in position X” then that can be helpful for your own mental health. But if someone else (well-intentioned as they may be) tries to push you to that place or makes you feel like you should be able to appreciate that “it could be worse”, it’s not helpful and can even make you feel worse than you did before. A little sympathy goes a long way. “I’m sorry you’re going through that” is a much better response in my opinion. Acknowledging that someone is having a tough time with something, rather than trying to push them back to “happy” before they’re ready. It always makes me think of the cartoon movie “Inside Out”.
You’re absolutely right! It’s a tricky thing to figure out what is comforting. I just pray we all find comfort as best we can and have the intention to encourage and support one another 🙂
ps. I really LOVE “Inside Out”!!